Upcoming Swallow Study

Bennett is still doing well with his feedings, although we have hit a small rough patch. We discovered shortly after returning home that Bennett is significantly struggling with drinking...so much so that we've been in talks with the Baylor Feeding Clinic about what to do next.

Bennett came home from the hospital drinking thick liquids since Bennett often coughs on thin liquids (such as water). So, we came home continuing to give Bennett Chocolate Milk with vanilla Carnation Instant Breakfast (often called "CIB" for short) for his drink...until about a week or so ago.

There came a time a few weeks ago when Bennett just seemed to hit a wall with his drink. He has never been a strong drinker (which is why we are on the feeding tube in the first place), but we felt when we left the Feeding Clinic that he was on his way.

At first, we wondered if maybe the Chocolate Milk with CIB might be too thick. So, we tried Chocolate Milk without CIB. That didn't work. Then, we tried Apple Juice. Bennett started to drink alot more of Apple Juice. But then, he started to hit the wall on this as well. We kept trying but we kept getting significant resistance.

From our conversations with our Speech Therapist and the team at Baylor, we've determined we need to give him a barium swallow study. We did one when he was a few months old, which turned out to show he had no problem. But there is a chance that, for some reason, he may now be "penetrating" (or aspirating) when drinking, which means he is drinking incorrectly and some of the fluid is briefly going towards his lungs rather than his down his esophagus to his stomach.

So, we have set up a swallow study within the next three weeks. As I explained to the Baylor team, I am scared if he is "penetrating" while drinking. But I am also scared if he's not. Either way, we are struggling to get him to drink and we need to help him through this step. If he is penetrating, we may look at utilizing the Vitalstim technique. If he is not, I'm not sure what the next step will be.

He is not likely aspirating, as this is usually evident by lung infections due to the fluid in the lungs. But there is a good chance Bennett is penetrating, making drinking very scary and/or painful. So, I am anxious to get this figured out.

If it turns out that his refusal to drink is just behavior, we will strengthen what we are doing with the feeding protocol. But, until I am convinced there is nothing physically/mechanically wrong with Bennett's ability to drink, we are backing off and allowing him to drink smaller swallows as needed.